Technology

Trying to keep up with technology has really left me behind . . . and, I basically forgot. I just relate it to +lupus fog. I am really going to make an attempt to keep up. I've been doing pretty well lately, although I have to admit being away from the hospital makes me feel strange (now that's very freaky!). Now how many people can say that? It is pretty darn disfiguring for a woman like me to actually admit that type of vulnerability. Here I am, sitting on my couch, trying to watch TV on a Wednesday evening . . . "The Americans" is the show currently on the tube. Keeping me warm is my old pal, the gentle petting 'feeling' of the universal language of touch, I can't believe how long he's been my pal. Initially, when diagnosed with 'Lupus' or 'mixed connective (?) tissue' disease, I didn't have my old pal and I'm reminiscing after having my Cytoxan intravenously, being home (supposedly resting), alone- I wept. The unconditional love like the innocence of a child, one day that I aspire to learn from . . . why do humans feel threatened by compassion [or love] when it is the natural feeling? I wonder if there's too much detail that our physicians let us know: maybe I'm experiencing psychosis? I almost don't know how much is too much, as to tell our loved ones, as to tell our physicians and/or therapist? First, we are told that our body has betrayed itself, we are told to expel our inner most feelings (thoughts/physically) so our physicians can continue to give us the help or nurture (or basically drug us to death!). Depending on what wording we choose to use with our physicians they'll either have us admitted & drugged or just write you off as a 'hypochondriac,' when a patient is labeled as a 'hypochondriac' their complaints [which is what I learned from working in all areas of running a private practice] I had intend to become a R.N. (registered nurse) when I initially graduated from high school. I never thought of myself of being anything more than administrative and nothing more [being compliant] like a wife, mother & friend. Perhaps- I had already known that my mind was not meant to be more than an assistant and/or secretary. What a waste of a brilliant mind, why give me a photographic memory, a need (appeal) to research every little thing, even if it meant to be nothing [like handling your anxieties (information)] when learning medical terminology, ICD codes, billing (procedure w/individuals that have insurance whether there is a primary or secondary or private pay or reimbursement. Knowing all of this information before being diagnosed, which has kept me more informed/educated decisions. I hated the 'threatened' feelings of when an emergency arises and it is a matter of minutes to make life long [amazing chemistry of giving life] decisions. When pregnant at 16 the ignorance of a 'young adult' mind, having a high-risk pregnancy . . . knowledge of our child's position [whether it affected 'breast milk'], that she was breach and there wasn't any time to think, if I should have general anesthesia, if there was [wasn't any] time, I had fully dilated and no one had paid any attention (just because I said I didn't need a wheelchair) maybe because I had experienced a life (of its entirety) long parental absence [it DOES make a difference as to 'how much?'] maybe if there was guidance/education of sex, the toll of the decision, what type of emotions aspired. Giving birth has nothing as to the 'mental' decision of losing your virginity to someone that isn't taking the type of commitment as you are (thinking to yourself) boys can make life, choose gender, and the decision of life [termination, adoption or the costs] that you are making for yourself and the unborn fetus. Just like the decisions or desires of treatment of your disease . . . we were at the hospital as signing away our life (there was no 'informed' decision as to whether we should harvest my eggs, that treatment will leave you sterile?). I could've fulfilled my dream to at least have more children if I chose to or if we, my 'husband and I' felt that we would want a child that shared our a part (DNA) from each of us to make one whole life. If only I was more informed of what the future held for me, as a woman (whether I give birth) the kinship of that love 'closeness' physically/mentally that you are as 'one' with your fetus for approximately 9 months, the re-shaping, that my 'hips' could hold another beating heart, that whatever we chose to eat or do (exposure to second hand smoke or just 'smoking' in general) the effects [let us know that our fetus and I are as 'one'] that eating strawberries or that getting the 'right' or full nutrition value. What if I decided to just have French fries, donuts, 'frozen dinners' (would you want your child that has parts of you and the boy's 'sperm' that fertilized your egg) eating? Can we tell that it officially had a 'mental' imprint on my mind some twenty years later? It is all about the information that our research let us 'educate' ourselves.

Heck, Where Have I Been?

I can't believe how long ago my last post was updated...I was having a somewhat good day until I did the un-mentionable...I went into a store with very cute clothes, I thought to myself...it has been a while since I've been in a store to shop. I've been shopping online for my needs bc I don't get out very much and that's what used to exhilarate me. I found some cute stuff on sale and some not...I kind of was thinking of skipping the "Dressing Room" part, but in these small, trendy stores...their returns aren't so easily done. So I went into the dressing room and did it. I couldn't believe how big my mid section was!! I wanted to scream and just jump off the second floor of the mall. Here I am with an xs sweater and one medium...they fit, but too short, I need one to go over my belly, ugh. I was determined! So I picked up the highest sizes I could find...generally I would put on a size 9 and that would be okay. Geez, I couldn't find anything over size 12, but I took them into the "Dressing Room". To my demise, every size did not fit! I should just shop in maternity (how embarrassing). The newest thing I've been doing has been drinking lemonade at Starbucks, I thought to myself how bad can it be? I drink juice all the time!! Of course, I've been drinking for awhile and became a "Gold" member on the Starbucks Rewards, system. Nowadays, almost everyday, I go through the drive through, by my house and I used to order a grande size (which is their medium), but now I've bumped myself up to the Venti size(which is their large). I'm sure this Starbuck run is not helping in the accumulation of fat. I've got an appointment today with my physical therapist and I believe that I have decided what I want to do! I want to work on my mid-section (trunk) of my body. I would rather have lipo or something...but can't afford it. I don't know what the outcome will be. Nothing, and I give up again? I see my teenage daughter (she looks like me when I was 18) but she just had me buy her two caramel apples: one with M&M's and the other with peanuts! She's an extra-small or size 0! That used to be me, even when I was diagnosed, I just kept hacking at my body like a crazy person. I finally gave up and just dealt with what I have and it only gets worse. My husband says it's me that doesn't want to have relations (SEX), but I believe it to be from my body. Being used to size 4, forever...now I'm somewhere in a double digit category?? I let everything go. I have been dealing with a lot of new symptoms of my lupus and I just let it all go...the piles seem normal. I was a type A, OCD freak, who couldn't sleep if there was a tiny mess in the house. Now we have maids and my husband, who really tries, but definitely not up to par with what I am accustomed to. I let my clothes in the closet sit in a large pile so that I don't even have to walk in. I can only wear so many items and I have a generous amount of clothes from my smaller sizes which I refuse to even look at. It is like I've become the opposite of me? How could that be? Really? I had to give in that my body can only do so much and I don't get as sick as I was when I was around 125 pounds. Now, I'm a whopping 162 pounds, bigger than I was when I was pregnant!! I want to roll up into a small ball and just cry. I'm supposed to be making dinner...but I am almost...I won't do anything. I'll have a salad and something, what I usually have but I'm still getting big, bigger and biggest!! I hate my body!! I hate what lupus has done to it and how deformed I am because the fat is allocated to different parts of my body making me look like a weirdo!!!!

Posting re: comment from Roberta Brown

Ms. Roberta Brown, are you wanting to tell me your story that you have Lupus and continue to work until you are 50 years old? I wasn't sure what kind of question you were wanting or was there something I said that you needed more clarification? Please let me know!!

Thanks!!

Living With Lupus: new things, new ideas & finally new treatment...

new things, new ideas & finally new treatment...

Yesterday, what a day!!! Benlysta got approved for treatment in Lupus patients which hasn't happened in over 50 years!! Such an accomplishment which has been all over the Lupus community. I don't even know how to express how I feel about having a drug, finally. I was diagnosed in 1998 and has been dealing with my Lupus till this day. In the past, we had two options: first, you can deny the drugs and just check your body, yearly or even more often. Secondly, you can take the drugs to keep you "comfortable". Being comfortable means that you take the drugs that they think may help the symptoms that are existing at that time and just deal with the complications and reactions from the drugs. You have to make the choice of what is more important...staying around longer to give up another organ. Depending on what type of Lupus you have, some organs are already compromised. As for me, it happened slowly, but definitely. At this moment we are dealing with my liver. This was something that the doctors had already told me would be coming because of all the medications that are given, your liver only can take so much - and after time, it will become one of your "problem" organs.